Sample Image

Our Story

Want to find out if you're a bone marrow match for Alex?


In the United States?
Visit his Be the Match site for testing information or a kit by visiting http://join.BeTheMatch.org/loveforAlex

In the UK?
Visit http://www.anthonynolan.org to register

 

This is Alex...


Alex Sims was diagnosed with IPEX syndrome in 2016 – an extremely rare autoimmune disease that most doctors have never heard of – with fewer than 200 diagnosed cases. In addition to muscle, joint, skin and digestive problems, Alex developed Type I Diabetes at the age of 2 and has experienced countless hospitalizations due to viral infections.  

Alex is in the third grade. He loves reading and really enjoys being at school with his friends. At school, Alex gets to forget about his disease and just be a kid. When he grows up, he wants to be a super hero. Iron Man is his favorite because he has protective armor and nothing can hurt him.

Most IPEX kids die within the 1st or 2nd year of their lives. Alex wasn’t diagnosed until he was 8 years old and has a different genotype of IPEX than other kids did. Doctors are hopeful that with a bone marrow transplant, he will be able to survive IPEX until a cure is found.

There are so many expenses involved with IPEX treatment – extensive hospitalizations, monthly specialist visits, weekly labs, immune suppressing medication and the bone marrow transplant itself, the costs of which could reach up to $800,000!

In addition to raising the money for COTA in honor of Team Alex, a matching donor needs to be found. There are currently 20,000 people who could benefit from a bone marrow/stem cell transplant and an estimated 3,000 people die each year while waiting for a donor. Donor screening is simple with a through-the-mail cheek swab testing kit. The ideal donor is age 18 to 44, but donors through age 60 may be used in certain cases.

In order to take care of Alex, his dad had to give up his job. COTA for Team Alex needs all of your help. Please share Alex's story on social media, volunteer to be a bone marrow donor, and donate to COTA today. Every donation can help save the lives of kids like Alex!

The Children's Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.

Comments

  • The COTA Staff

    We are happy to be working with you!

  • Georgianna

    Alex, my friends and I are here to support you and your family to getting all the help you need to beat IPEX. Stay strong buddy, we love you!

  • Nancy Reed/Ed Kennedy

    The website looks great, and we enjoyed the video narrated by Alex. He is such a sweet boy, and we hope that the bone marrow transplant will give him the opportunity to lead a normal life. We'll be at the volunteer meeting here next week.

  • Logan B.

    Logan B., your third grade classmate at Parker Elementary donated $2. of his own money, to help you get better. What a great friend!

  • Your friends and family in Bradenton, Florida

    Hi Alex, we are all working and praying hard for you here in Bradenton, Florida. Stay strong!

  • Your friends at American Legion

    Alex. Yesterday American Legion Posts 312, 309, 325, 24 and 266 in Florida got together and held a poker run, to raise donations for "A Cure for Alex".Two young ladies signed up with the bone marrow registry at that event. Also VFW Post 10141 has held three fundraisers in your honor. They will all be donating to COTA, in your honor. We just wanted you to know how many people love you and are praying for you to get better. Love Nana Sherry

  • Karin Silva

    You are such a doll and have completely won my heart! ?? I pray that you'll find a donor that's a perfect match for you!!

  • Shirley Gibson

    Thoughts and prayers are with you little man :) I just signed up to request my donor kit.

  • Woody's River Roo & Guests

    Alex, on Sunday Woody's River Roo hosted a fundraiser to help pay for transplant expenses. About 1000 wonderful people came out to support you. They all send best wishes and good vibes and prayers for a donor and for a complete recovery for you, after transplant. Hang in there buddy, so many people are praying for you. You truly are a Super Hero!!!

  • Nana Sherry

    Hi Alex. All your friends and volunteers in Florida are trying very, very hard to sign up and register a lot of bone marrow donors. Fingers crossed that one of them will be your match!!!! Love you bunches.

  • Rick Lofgren, COTA President

    Greetings from COTA! I want to congratulate the COTA for Team Alex S volunteer team for an outstanding job raising funds for the campaign in honor of Alex! When I set the campaign fundraising goals with all of our families, I try to do so knowing that some communities and volunteer teams have more developed resources and connections than others, and in fundraising these are critical to success. With this in mind, I usually suggest a goal to COTA patients that I believe is needed for any patient’s long-term expenses and transplant-related costs, and the goal generally reflects the next four to five years of out-of-pocket costs. For example, most of our patients will have $5,000 in annual co-payments, deductibles, and medications, as well as $7,500 or more of additional costs for clinic visits. This could mean $25,000 - $30,000 for these costs alone for any patient in two years after transplant. In this case, because your team and supporters have done such a great job, and with Alex’s ongoing care as he prepares for his transplant, I spoke with his family and suggested that we raise the goal to better reflect what I believe is the true long-term expense that a patient will incur given age, insurance and other factors for someone going through his situation in the coming months and years. Because of this, I have raised the goal for the COTA for Team Alex S campaign team from $75,000 to $150,000 to reflect what I believe will be actual costs going forward. Please know there are many factors in this and that I bear the responsibility of justifying this to anyone who asks, and am happy to do this as I believe that it is the right thing to do. I want to convey that this is not a request for everyone to go out and do more than previously planned, but simply a reflection of realistic long-term costs. Thank you for all the work and support you have provided to this point, and please keep Alex and his family in your prayers as he continues along his transplant journey!

Leave a Comment